Resources for researchers and sleep study centers

Guide for research or sleep study centers

You can improve your data collection and the experience for PWH in many ways, such as by training staff about hypersomnias, using clear communication, and creating a comfortable and safe environment.

Educate staff about PWH

Hypersomnias are rarely diagnosed, so site teams may not know very much about them and how they affect people. Make sure site team members working with PWH understand their unique needs and how to adjust study protocols to meet those needs. 

Communicate clearly with participants

Use communication styles that are easy for PWH to understand

See our “Guide to communicating clearly with PWH” above.

For sleep studies, coordinate ahead of time with PWH and their clinicians 

• Schedule all desired sleep studies, such as actigraphy with sleep diaries, home sleep studies, home EEG, ad lib extended sleep studies, MWT, and MSLT.

  • Download the American Academy of Sleep Medicine’s (AASM’s) Two Week Sleep Diary.
• Plan to measure all desired variables (such as apnea hypopnea index, respiratory disturbance index, and REM latency) to lower the chance that PWH will have to repeat testing.

  • Follow AASM’s “Recommended protocols for the MSLT and MWT in adults” and “Manual for the Scoring of Sleep and Associated Events.” 
• Confirm any plan to stop or change dosing of any medicines or supplements before the sleep studies.

  • Many medicines, such as antidepressants and stimulants, influence sleep propensity and architecture. Stop these at least 14 days (or at least 5 times the half-life of the medicine and longer-acting metabolite) before sleep studies. 
  • Some medicines, like antidepressants, can cause withdrawal symptoms if you stop them too quickly, so slowly taper them off. This can take several weeks.
  • Some medicines can also take a long time to become effective again after restarting them. Discuss this with the PWH.
• Have PWH sleep as much as they need for at least 1 week (and preferably longer) before the studies. This will help rule out insufficient sleep.

  • Use a sleep diary and actigraphy whenever possible.
  • If PWH are not able to get enough sleep, consider rescheduling the sleep studies. 
• To meet these test protocols, you may need to help people access medical leave, such as FMLA or short-term disability, for a couple weeks from their work or school. (Refer them to our web pages “J​ob accommodations and disability income” and “Going to school while coping with a hypersomnia.”) This is especially the case for:

  • People who need to stop one or more medicines before testing.
  • Children and long sleepers who need to get more than 7 hours of sleep at night for 1 to 2 weeks before testing.
  • Shift workers, who often need to stabilize on a normal schedule for accurate testing.

Carefully plan and schedule

• Ask PWH about their typical sleep needs and sleep-related symptoms and plan accordingly. Interruptions to their usual or ideal sleep schedules are likely to negatively affect their cognition and sleepiness and may affect study results.
• Ask PWH to talk with study doctors before starting any new medicines or treatments.
• Try to avoid schedule changes, new events, and new tasks. 
• Give clear and complete directions and information about the study, such as

  • What will happen during the visit and what to bring.
  • Directions for parking and checking in at the study location.
  • Types of food available and the forms of payment accepted.
• Tell participants about on-site recovery spaces and transportation policies. 

  • Where possible, have a dedicated recovery space for PWH to rest, take a nap, or sleep for a few more hours as needed. 
  • Some PWH may not be able to drive to or from their appointments, even if they have access to a recovery space. See “Drowsy Driving Considerations in Non-Commercial Drivers for the Sleep Physician” in the Journal of Clinical Sleep Medicine.
• Discuss discharge plans with PWH, who may need plans similar to those for procedures under anesthesia.

Create a comfortable and safe environment for PWH

Sleep studies

• Understand that MSLTs (Multiple Sleep Latency Tests) and MWTs (Maintenance of Wakefulness Tests) can be very difficult for PWH who are prevented from getting the sleep that they need. The test protocols require that PWH are out of bed and not allowed to sleep between each nap or wake trial. When they’re allowed to fall asleep during each trial, they’re quickly awakened (15 minutes later in the MSLT and after 1 to 3 sleep epochs in the MWT). This can: 

  • Significantly worsen their sleepiness and sleep pressure, which can be extremely painful. 
  • Lead to severe sleep inertia after each short nap or wake trial.
  • Trigger associated symptoms, such as brain fog, headaches, hallucinations, and more. 
• Allow PWH to sleep as long as they need or normally do when participating in sleep studies. This might mean extending how long the sleep study lasts or having recovery areas for sleep.
• Follow standard sleep study protocols for outside factors that can influence ability to fall asleep, such as temperature, light, noise, interruptions, hunger, personal activity level (keyed up or not), and personal comfort level. In spite of their hypersomnolence, PWH may have difficulty falling asleep when expected. 

  • Allow PWH who are sensitive to heat and cold or fluorescent lighting to control the room temperature and light-levels during study sessions.
  • When sleep study protocols allow, avoid turning lights back on until the PWH lets you know they’re ready.

Sleep and research study appointments

• Understand that symptoms around sleep times are often worsened. For example, PWH with severe brain fog or sleep inertia may need assistance simply to find a bathroom down the hall.
• Ask participants how alert they feel throughout each appointment to make sure they are awake enough to continue with activities. Consider using the “Pictorial Sleepiness Scale Based on Cartoon Faces” from the book STOP, THAT, and One Hundred Other Sleep Scales. Just because a participant looks alert doesn’t mean they are alert.
• Encourage participants to use relaxation or meditation techniques to lower anxiety during appointments. They may feel anxious about “passing” sleep studies to get access to treatment, which can lead to an inability to sleep despite overwhelming sleepiness. If they’re unfamiliar with these strategies, you can share information about deep breathing, progressive muscle relaxation, visualization, and more. You can find examples of these techniques in Mayo Clinic’s article “Stress management.” 
• Give PWH a brief exit interview to assess if they’re ready to leave the center. If they or the medical team believes they’re not ready for safe discharge, talk with the PWH to see what they need to be ready. For example, they may need time in a recovery or sleep space, wheelchair assistance to get to their car, or to talk to their supporters.